exploring the realities of obsessive compulsive disorder

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This Old Ghost

The Secret Illness is all about exploring the realities of living with OCD through the creative arts. “This Old Ghost” was developed from a poem written by James Lloyd. James is a writer and science journalist in the UK and has suffered with OCD since childhood. As it’s such a personal poem James chose to voice it himself. The animation is by filmmaker Liz Smith.

We asked him about his poem and experiences of living with OCD.

What has your experience of OCD been?
I’ve had obsessive thoughts for as long as I remember. As a child, my head would dream up all kinds of horrible scenarios. I used to lie awake thinking that the house was going to burn down, or that an intruder was tiptoeing around the place. I remember once becoming convinced that a stranger sitting behind me in church was going to kill me. As I got older, the thoughts moved on to other things, often sexual or violent. It felt like my mind had become stuck on repeat, playing the same terrifying thoughts over and over. I began to think that I was a horrible, evil person.

I suffered like this for years, through school, college, university, jobs. Then two or three years ago, out of the blue, I read something about ‘Pure-O’ OCD. Things began to click into place. Intrusive thoughts, as it turned out, were a fairly normal part of human experience, even for those who don’t have OCD. But I had this particular type of OCD, where my intrusive thoughts had grown out of all control, consuming my mind. I had all these obsessions and compulsions going on in my head, invisible to everyone but myself.

It’s hard to explain OCD to someone who hasn’t experienced it. It’s a torturous, exhausting illness. Every waking second becomes tainted by unwanted thoughts – thoughts that you just can’t get out of your head. And the more you try not to think about them, the stronger they become. It’s like living in a nightmare. There were days when I wanted to go to sleep and not wake up again.

What inspired you to get involved with The Secret Illness?
I went years without realising I had OCD. I knew about the illness, but I had no idea it had anything to do with intrusive thoughts – I’d assumed it was all about wanting to be neat and tidy or wanting to be clean, as it’s usually portrayed in the media. These behaviours do form part of OCD for many people, but it’s always the intrusive thoughts that are driving it – and many sufferers have no outward compulsions at all.

Projects like The Secret Illness are crucial if we’re ever going to change the typical media representation of OCD as a trivial, quirky illness. I’ve been through so much pain with my OCD, and I’m sure there are thousands of people out there who are suffering in silence, who possibly don’t even realise that they can get help.

It moves me so much to read the posts on this website and see so many people coming forward with similar experiences. It really is a secret illness, but that’s starting to change.

What’s the thinking behind “This Old Ghost”?
I wanted to get across the pain of living with OCD, but also the feeling of hope that comes with knowing you’re not alone in something – whether that’s OCD or something else entirely. I went to the OCD-UK conference in York last year, and I found it overwhelming to see so many fellow sufferers in the same room, all with the same kinds of stories and experiences. That’s an incredibly powerful feeling.

How does it feel to see the poem come to life?
Really exciting! I can’t wait to share the video with people. It’s slightly strange to hear my own voice on there, but it’s such a personal poem that I wanted to voice it myself. I’m chuffed to be part of the project.

What do you hope people will take from watching “This Old Ghost”?
For those who have OCD, I hope it reminds them that they’re not alone. It’s such an isolating illness, but there are a lot of us out there. I’d encourage people to seek out that community, whether that’s by joining a support group, attending a conference, accessing cognitive behavioural therapy, or even just signing up to an online forum. I know how scary it can be to make that first step, but it’s worth it.

For those who don’t have OCD, I hope it provides an insight into what it’s like to live with this illness, and I hope that they can help us to spread the word!

There’s something wrong with me,
but it’s not something you can see.
I’ve got no scar or suspect rash,
no lump or bump or missing limb,
no sudden slump or system crash.

It’s this old ghost I’ve got, you see.
It only shows its face to me.
It plants these questions in my head
and sends them spinning round my chest.
It never settles down to sleep;
it never lets me get some rest.

And when I try to wriggle free,
this wicked ghost, it clings to me.
It whispers stories of my doom,
this effervescent thing, it looms
and fleshes out my brittle bones
while I’m out swimming in the sea.

But just as I’m about to flee,
far out into the gloom I see
a thousand faces blinking back,
all floating on the open sea.

They’re smiling as I watch them glow,
a dreamy moonlit lantern show,
all drifting through the same deep black –
I wave at them and they wave back –
one thousand hands against the sky,
one thousand souls who’ve gone awry,
all swimming through the same cold sea,
and they’ve all got old ghosts like me.

OCD is an isolating and exhausting illness. At its worst it makes you feel as though you are behind glass from everyone else, taking part on the outside, but with a loop of questions and horrible suggestions on permanent play in the back of your head. Thank you for this poem, for sharing how tenacious “the old ghost” is, and for reminding us that we are not alone, that there are many more like us, all swept along in that same sea, with the ability to reach out to one another.